Human genetics ethical legal and social issues
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Human Genetics: Ethical, Legal and Social Issues. The American Society of Human Genetics Dr. Joann Boughman, PhD, Executive VP. Genetics. Important to everyone All consumers/patients Your family history story Your medical history Scientists and consumers alike.

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Human Genetics: Ethical, Legal and Social Issues

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Human genetics ethical legal and social issues

Human Genetics:Ethical, Legal and Social Issues

The American Society of Human Genetics

Dr. Joann Boughman, PhD, Executive VP


Genetics

Genetics

  • Important to everyone

  • All consumers/patients

    • Your family history story

    • Your medical history

  • Scientists and consumers alike


  • Characteristics of genetic data

    Characteristics of Genetic Data

    Genetic information is:

    • Personal

    • Permanent

    • Predictive

    • Prejudicial

    • Pedigree-sensitive


    Uses of genetic tests

    Uses of Genetic Tests

    • Diagnostic (adjunctive, prognostic, treatment)

    • Predictive(prognostic, intervention, planning)

    • Screening(newborn, selected population, carrier)

    • Pharmacogenetic (individualized medicine)


    Context

    Issues

    Ethical

    Legal

    Social

    Actions

    Regulatory

    Legal

    Social

    Context


    Privacy

    Privacy

    Right to prevent information from disclosure

    Condition of limited access to a person

    A

    B


    Confidentiality

    Confidentiality

    • Right to prevent redisclosure of information

      developed in a confidential relationship

    A

    B

    C


    Issues

    Issues:

    • Predictive testing

    • Probabilistic answers

    • Privacy & Confidentiality

    • Informed consent

    • Equitable access

    • Discrimination


    Long term effects

    Insurance

    Employment

    Disability

    Medical care

    Lifestyle

    Family/children

    Insurance

    Obligations to employees

    Responsibilities of others

    Long-Term Effects


    Genetics is a family affair

    Genetics is a Family Affair

    • Obligations TO relatives

    • Obligations OFrelatives


    Potential of genetic testing

    Potential of GENETIC TESTING

    • Only as beneficial as the processAND the application of the information obtained.


    The success of genetic medicine depends on

    The Success of Genetic Medicine Depends on…

    • Accurate transmission of complex and predictive information given to individuals (and appropriate others).


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